South African Supreme Court judge Justice
Edwin Cameron stunned Africa when, five years ago, he publicly disclosed
he was living with Aids. PN caught up with this inspiring activist at the
launch of his candid new book
Words David G Taylor
Images Piers Allardyce
For three years you lived with your HIV diagnosis without confiding in anyone.
What was that like professionally and personally?
It was one of the worst periods of my life because it was a time of intense
professional pressure. The time of the riots in South Africa in the late 80s
was challenging and exhilarating, but quite difficult. I think most people
who receive an HIV diagnosis even now experience a terrible shock and sense
of personal depression and contamination. I always think that what it was
for me then, in 1986, it still is for most Africans now: a death sentence,
because treatment isn’t fully available. It was a time of intense loneliness,
isolation, almost a physiological depression; the worst I’ve had in
my life. Work was a kind of escape. I managed to stay functional through it
all and just
suppress the HIV diagnosis.
In your book Witness To Aids you say you initially felt “tainted,
soiled and polluted” by the virus. Do you still feel that way?
Not at all, but I say that with great confidence years on. It’s been
a 20-year struggle. To get to the point where you truly believe that this
is just a viral particle, and the fact that its sexual transmission is incidental,
is very difficult. The notion of a sexually transmitted disease still has
great stigma attached. It isn’t about homosexual transmission, because
in Africa it’s an overwhelmingly heterosexual disease and there’s
the same stigma. The turning point for me was the success of treatment. I
knew within two weeks of starting that some physiological miracle was happening.
Once I knew the virus was suppressed, I felt totally different about my life
and that’s what gave me the courage to speak out.
Was there a particular catalyst which made you break your silence?
The trigger was the death of a young woman called Gugu Dlamini in a Durban
township. She spoke publicly about her HIV status just before Christmas in
1998, and was killed for it. Members of her own community stoned and stabbed
her to death because of her speaking out. I thought, ‘I’m living
with the professional and middle-class protections, surrounded by caring friends
and family, and I’m not speaking, but this woman did’. That’s
what compelled me to speak. I also knew that I had to confront the dichotomy
of my life. I was well known in Aids circles as someone involved in Aids policy
and human rights as a lawyer and later a judge, and yet I was also someone
living with HIV. I hadn’t integrated those two things, and speaking
out enabled me to do so.
Were their repercussions in your professional life?
Not at all. I was greeted with an absolute deluge of affection, love and praise.
People still stop me on the street. What’s puzzling is that other people
holding public office in South Africa haven’t felt able to follow suit.
Why do you think your disclosure was so well received?
In South Africa more than one in ten of all people have Aids or HIV, and it’s
an
epidemic of silence. Most of us who went to Aids conferences in the late 80s
and early 90s were aware of angry gay men from England, Western Europe and
North America giving voice to the epidemic, but that hasn’t been the
case in South Africa. Paradoxically, I was a very atypical voice.
I was a judge, a white man and a gay man in an epidemic which overwhelmingly
affects poor heterosexual woman and men in black Africa. Even though I was
so atypical, people were looking for a voice, and I think that was part of
the positive reaction.
Was it harder disclosing your status to family or going public to
the nation?
The public statement was unquestioningly the hardest, but family was very
difficult. It’s almost inconceivable as someone who’s living openly
with HIV to re-imagine the inhibition that you feel. One has to do it because
those inhibitions are life-threateningly real. As we speak, people in Africa
feel that sense of terror, that sense of self-disentitlement, that sense of
contamination. I’m very close to my sister and I felt I couldn’t
talk to her about it for three years. I just couldn’t. Most people,
when I eventually told them, said: “Well, why didn’t you tell
us earlier?” But part of the problem with being HIV positive is there
are two dimensions to the stigma. One is the external dimension, the fear
of discrimination which is very real, but I think the more important dimension
is the internal: how bad you feel about yourself and within yourself. That’s
what makes it so difficult to talk to family.
In a country where millions do not have support from their family
or employers, or even the ability to afford treatment, did you feel any guilt
about your position?
Yes, emphatically, and rightly so. In a world skewed by disproportion one
should feel guilty about having so much more, often grotesquely so. The question
is not whether you feel guilt, but what you do with it. You can transmute
it into positive action, and that’s what I’m trying to do. I think
all of us who have relatively affluent lives have to ask ourselves what we’re
doing in relation to the guilt that we might feel about our
disproportionate privilege.
The book mentions Aids-denialists within the South African government.
Is that still the case?
We still don’t have a heart-felt, single-voiced national response to
the epidemic. There still seems to be some measure of ambivalence among some
of the top structures of government. However, and this is the rosy side of
things, about two years ago the government did commit itself to provision
of antiretrovirals and that’s happening. It’s real, not just a
bureaucrat’s phantasm. So, while the Minister for Health still says
things for which she’s attacked by the media which seem to indicate
ambivalence about Aids, public provision of antiretroviral treatments is happening
on an increasingly large scale in South Africa and that’s the important
message.
But although there’s free treatment, many are still not coming
forward?
In my book I tell the story of a man who worked in my garden twice a week.
He knew I was living with HIV, knew that I could help him get access to the
drugs and that I’d been saved by them. I suspected he had Aids, but
he went back to his country of origin and died. I blame myself in the book
for not being more interventionist in my approach to him. It’s happening
less because the social nature of the disease is changing, but it’s
still a profound problem throughout central and southern Africa: that people
are unwilling to acknowledge their diagnosis.
Is it simply fear of stigma?
It’s too easy to say it’s stigma. There is discrimination and
fear of discrimination. Women diagnosed with HIV do get thrown out of their
homes; people still do lose their jobs, and they’re disadvantaged. So
there definitely is stigma. I think more important is the internal dimension.
People with HIV feel a sense of self-disentitlement, which prevents them from
seeking access to treatment, even when it’s available. That has to be
addressed as well.
• Witness To Aids, by Edwin Cameron, is out now (£12.99, I.B.
Tauris). Available from www.ibtauris.com
and all good book stores
